Good Cop....Bad Cop.

This forum is for posting your personal experiences with BFS: symptoms, doctor visits, fears, etc.

Please use this forum to post give and recieve encoragement and reassurance from sharing the trials and triumphs you have faced.

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Good Cop....Bad Cop.

Postby Ghayes420 on October 16th, 2012, 8:06 pm

To preface this, this is a venting post, not a freak out post, I am sick of those. It may or may not provide you with reassurance. This was meant more for my own personal reassurance and relief.

BAD COP….
How on God’s green earth can this be benign? I mean come on, really? I have so much *beep* going on with my muscles that I cannot comprehend how this can be something that is considered even close to the realm of ‘benign’. 14 straight months of this without a day, heck a single hour, without some muscle twitching somewhere. Many members here like Chrissi and Mommylondon were hit hard and fast with their symptoms and then things leveled out. Mine started small and has gone into a full blown orchestra of spontaneous muscle activity.

Right now the twitching is SECONDARY to the s*@t I have going on. True ‘feelings’ of weakness, odd ‘feelings’ in the muscles like losing dexterity, biting the tongue, sore/tired tongue, problems with breathing and sleep, my joints that pop and crack all the *beep* time now, numb fingers from ulnar irritability, my hotspots that last for day or months, twitching on the left side dominant, cramping in my left hypothenar today, sore muscles that take several days to recover from exercise, pulling and strain muscles very easily. I used to be a collegiate scholarship athlete and I almost felt better on the day after a football game! I could go on and on and on….

I wouldn’t wish this BFS/CFS/BCFS/PNH, Fibromyalgia, (whatever crappy dx you want to throw on it) on anyone, but sometimes I want to have somebody just sit in my body for an hour and tell me how you can sit there and not be a bit freaked out. No amount of therapy, medication, reassurances, etc are going to get me to stop noticing that my muscles are spontaneously firing all over my body, head to toe, 24hrs a day no matter what kind of stress I am under. Do I sound a bit anxious? [email protected]*&K yes I am anxious, and anybody with even an amateur medical background would be nervous as well, if you think they wouldn’t be, you are delusional. That’s why so many actual doctors visit their neurological colleagues for this stuff. They know something isn’t right. Heck, I KNOW something isn’t right here. I wish somebody on this earth could tell me what’s going wrong with my body and explain to me why this is happening. There are plenty of anxious people in the world, those who are so bad enough to need multiple medications, can’t hold a job or leave their own home, that DO NOT twitch all over their bodies every day from a set beginning. My body belongs in the Smithsonian Institute or at least next to the piano player at the Mayo Clinic. And if anyone tells me one more time that this is a result of “anxiety and stress” I want to note that I am 6’2” 230lbs and I am a gunowner.


GOOD COP…
I was dx’d by a neuromuscular specialist of having BFS on 8/31/2011. The EMG done at that time was clean and normal. Not satisfied, three months later, I sought out the Director of the ALS Clinic at UCSF (top 5 teaching hospital). She concurred that the dx was BFS and told me that she wanted to see me in one year. She told me that my chances of ALS was 1 in 10,000,000 or roughly the same as getting hit by lightning.
Not satisfied, and after having globus sensations, at month eight, I went to Forbes Norris ALS Research Clinic in San Francisco. I saw the second in command, former head of neurology at Stanford University and now eight years at Forbes Norris doing nothing but ALS/MND. He didn’t seem impressed, did a clinical which was normal, and offered an EMG of my right side and tongue, which was clean. He concurred the dx was BFS.
Then my bicep wouldn’t stop, so I returned to him again at month 9. He said, “nice fasciculation”. I begged for an EMG, he stuck it in, saw the fasciculation. He also saw a fibrillation. I heard it, I about fainted. He said to relax, this isn’t MND. Did more EMG on the left side, said this isn’t ALS and sent me on my way. I later sent him an email telling him that it was hard to believe that with a fib, he sent me, in writing. “This isn’t ALS now or ever. You bicep is frustrating, but is not harboring a degenerative illness.”
Globus Sensations continue/intensify…month 10, go back to Forbes, this time to see the head guy. He is highly regarded with over 30 years of clinical experience in ALS/MND. He was also the one who dx’d Steven Gleason with ALS. I received two clinicals that day and the head man said that I don’t have MND. My chances were the same as the general population. He gave my wife and I a hug and sent us on our way. Month 12, back to Forbes for more globus sensations, swollen scalloped tongue, etc. Head guy did a thorough look at the bulbar area, again says no ALS, no sign of it. Last week, month 14, back to the head of the Forbes Norris clinic, this time because I am having bad, scary sleeping issues. They are real and not fun to have. They tested forced vital capacity; it was 116%, no chance of diaphragm weakness. He put me through a battery of tests which included push-ups and squats. He said that he can conclude that with 14 months of this constant twitching and this many clean clinical exams that my chance of having ALS is zero. That’s right 0%. I think this is a bold claim, but how are you going to argue with this guy? He has seen it all. My wife was there to hear it. He told me that another EMG was not needed, but that he would do one if I wanted one. I declined the offer. (hey "progress!, not perfection").

THE END.

The reasons for me documenting this are because I like to see the huge disparity between what is happening to my body, how I perceive it and what the doctors are saying.

Also was hoping to provide a bit of reassurance to others that have these type of progressive worsening symptoms. You are welcome to look like an idiot and go to the specialist several times asking repeatedly if you have ALS, but instead I was an idiot for you.

Someday very soon I hope to fully slay this dragon, but until then I am very thankful and grateful for the people who take their own time to help others attempt to understand this condition. And when I mean ‘slay this dragon’ I am not referring to my obvious fear of MND, but rather to giving up on wondering what the hell is happening to my muscles.

Thanks for listening.

Greg
A very proud fasciculator since 8/14/2011. :)
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Re: Good Cop....Bad Cop.

Postby Niki6 on October 16th, 2012, 11:16 pm

Wow Greg!
If you were that hard to convince I fear I'll never mentally feel better. I'm newly registeted to this forum but I have been following it a few weeks now. I have not been dx'd with bfs as of yet but I'm praying for it over als as I'm sure all here do. I have spoken to Mommy London and read all day and all night about why my symptoms are NOT als but the one or two things I had the luck of coming accross which contradict most of how als prensents is consuming me. Even the fact that I had a clean mri of my spine and head is upsetting because als wouldn't show there anyway. How sick is it that I was upset nothing showed up. That's how terrified I am of als. My neuro hasn't even mentioned an emg and I'm almost afraid to get one for fear of the results. Many of the symptoms you describe sound like me so I felt compelled to respond. I have only been experiencing these symptoms a few weeks.......or have I......my mind is making me crazy racking my brain for things I may have noticed a while but didn't realize I was having them. I'm hoping you get some relief from your symptoms soon. And thank you for posting. Reading so many stories like mine does bring comfort :)
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Re: Good Cop....Bad Cop.

Postby Bosley22 on October 16th, 2012, 11:29 pm

Gotta say Greg, you scared the *beep* out of me with that last sentence in the "bad cop" segment lol. :shock:
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Re: Good Cop....Bad Cop.

Postby chrissi on October 17th, 2012, 3:05 am

I totally understand your "bad cop" part. I mean, hey, how can something that is so irritating, so painful and just so WEIRD be called benign? How can you be stuck to your couch or bed for weeks or even months because you feel to weak to walk ar the pain is just unbearable, so that even the maximum dosage of painkillers does NOTHING for you? How can body parts get numb enough to make you able to stick a needle in there? How can your hands loose dexterity so you keep dropping stuff all the time, and feel so weak and stiff that you have problems stretching them out? And-come on-you have seen my fingers tremors. They still do that. HOW CAN THIS ALL BE CALLED BENIGN?????????????????????????????? Well, it can. If benign means: it will not kill you and it will not leave you disabled for the rest of your days. All I have to say: pe patient. With yourselves, with your bodys. And learn to TRUST. Trust your doctors, trust the oldtimers. There are people that try to help you, reach out for you and say: OK, give a bit of that burden to me. I will help you carry it a bit telling you the truth about BFS: You will be OK. You will be OK. It is a pain in the ass but whenever you have a doubtful time, look at those who have been there and they will tell you: kep your head up. You are on your way through this and you will get over it. Forget the but's and if's....just trust. There are about a million of questions about BFS and not really a lot of answers, only some vague theories and possible scenarios. Little puzzle pieces, far away from completing the puzzle. Maybe we will never know. I know and see that people ae desperately trying to find the name for this. They want a "real" disease, a real name for it, so every doctor will know it and maybe even has an idea where it comes from and how he can heal it. This most likely wont happen. Because I really think that there are thousands of reasons for BFS and docent of ways to find relief. The first step is always overcoming your anxiety. For some people it is the hardest one, getting to a point where they loose the fear about what is going on. When this stepstone is overcome, you will find your own way to deal with your personal BFS. Hey, try to trust me. Haha, I know you can't, this is part of BFS. But one day , when you have overcome all this, you will say the same to a scared person and you will mean it from the bottom of your heart: It s OK, trust m, you will get over this and it won't kill you. But it is a f**ng da**ed pain in the a**. :mrgreen:
"Our anxiety does not come from thinking about the future, but from wanting to control it" Kahlil Gibran
Anxiety is a thin stream of fear trickling through the mind. If encouraged, it cuts a channel into which all other thoughts are drained
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Re: Good Cop....Bad Cop.

Postby jerry2 on October 17th, 2012, 3:40 am

I understand your first part quote well, it is like I myself would wrote it. And I guess many others here. Most actually.

I don't understand the second part. You got to be happy. The so many top doctors gave you all clear for terrible diseases. I wish I had ONE of those all clear like you did. A doctor saying 0% possibility... doctors never want to say that and they said it to you. By all the reassurance you HAVE TO get MS, ALS etc. out of your mind forever. You really do. Then you can work on living with something as describe in part one that will not kill you but as you said is still miserable to have. But then again, you will come out of it stronger, possible one day this will all be past for you and you will know how to thank every and each day like it was your last. Such scary things can really teach you to appreciate life for the miracle that it is, day after day. And not take for granted that you walk, talk and do things. In pain, in suffer, but you still do.

As I told you many times, your story is so simmilar to mine (the first part) I really feel connected to you. Take care!
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Re: Good Cop....Bad Cop.

Postby mwagner on October 17th, 2012, 10:15 am

Greg,

That was an awesome post, and I think just about everyone here can relate to a degree. This morning, I'm not twitching much if at all, and I'm not very anxious.

This weekend I had laryngitis with no other cold symptoms and immediately thought - "what if this isn't a virus, and it's neurological - vocal cord paralysis?". Thank GOODNESS my voice has <somewhat> come back! I mean, 5 years ago, if I lost my voice, I wouldn't have been all over the Internet reading about laryngitis and it's causes, and thinking I might have paralyzed vocal cords. I mean, this BFS stuff really has caused my health anxiety issues (which were somewhat grandiose to begin with) to get out of hand. My husband thinks I'm insane when I say things like "I hope my vocal cords aren't paralyzed".

And days I twitch a lot, or in a new spot, or have any new neurological symptom (my latest is I feel like there's a bug crawling around in my hair) - I'm back to thinking that maybe I need to go to a neurologist again. But, unlike you, I'm so resistant to seeing any doctors again, because I'm so afraid of getting bad results of anything. Heck, they could take a cholesterol test on me, and I'd be afraid that they'd find something wrong with my blood and call me back in. No news is good news to me, and that's not a good attitude either. I could have a B12 deficiency and I'd never know it.

In a way, I feel like some of our lives have been changed forever due to our BFS. In my case, it has made me so fearful of the disease that we all fear, and has made me so horrified at the reality that this disease exists. But, it's also made me fearful of all health issues. I wish so badly that I had never started twitching. But, at the same time, I'm so grateful that 15 months into this, I'm still okay. A year ago, I wasn't so sure I would be...

I'm also so grateful for this forum, because we have all found each other and can be there to support each other. Because one thing I have learned is that no friend, family member, etc., quite "gets" this. Some are more patient than others, but really, we are so lucky to have each other.

Mitra
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Re: Good Cop....Bad Cop.

Postby edado69 on October 17th, 2012, 10:26 am

This post does reflect the way I do feel.
Fasciculating from the 25/03/2007 (as accurately as I can recall!...)
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Re: Good Cop....Bad Cop.

Postby jerry2 on October 17th, 2012, 10:26 am

mwagner wrote:I'm back to thinking that maybe I need to go to a neurologist again. But, unlike you, I'm so resistant to seeing any doctors again, because I'm so afraid of getting bad results of anything. Heck, they could take a cholesterol test on me, and I'd be afraid that they'd find something wrong with my blood and call me back in. No news is good news to me, and that's not a good attitude either. I could have a B12 deficiency and I'd never know it.

In a way, I feel like some of our lives have been changed forever due to our BFS. In my case, it has made me so fearful of the disease that we all fear, and has made me so horrified at the reality that this disease exists. But, it's also made me fearful of all health issues. I wish so badly that I had never started twitching. But, at the same time, I'm so grateful that 15 months into this, I'm still okay. A year ago, I wasn't so sure I would be...

I'm also so grateful for this forum, because we have all found each other and can be there to support each other. Because one thing I have learned is that no friend, family member, etc., quite "gets" this. Some are more patient than others, but really, we are so lucky to have each other.



Mitra, I can only sign by your post here as if it would be my own. I thought everybody just goes to doctors and doctors and I am also the one that are so afraid of the possible bad or suspicious news I don't even dare going. And I may miss something in the future that is treatable.

About the life changing I can also make my sign there and about the support here also. You only have 3 month more of this stuff than me, this is the only difference I see from your letter ;-))) I am also so happy some day where I have a little less twitching or no new hotspots or my ankle pain is a little better I am so full of energy and the next day my ankle hurts more again and there is a new or old hospot or I am like a christmass tree that my morale really goes down that this will be really better in the future. But I guess there is hope as long as we live.

Take care Mitra!
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Re: Good Cop....Bad Cop.

Postby bobajojo on October 17th, 2012, 12:15 pm

Greg,

Do us all a favor. Take that gun of yours that you mentioned, and shoot the bad cop. He's not helping anyone.

Compare BFS to heart palpitations. Would anyone with a non-medical background think that the heart misfiring on its beats is nothing to be concerned about? No. But its just that, nothing to be concerned about. I've had them for over 20 years.

I couldn't disagree more when you say "anyone with even an amateur medical background would be nervous". After all that reassurance you've received? I don't think so.

At some point, you are going to have to accept your symptoms. They suck, trust me I know. But in the grand scheme of things, this is a cake walk compared to some of the other stuff out there.

I know you asked all the ALS specialists every question imaginable. And you saw Dr. Miller, one of the most recognized ALS experts there is. They all came to the same conclusion. In addition, your symptoms match thousands of people whoe have passed through this great forum and their stories also prove that what you have, although very bothersome, is benign. Based on what doctor Miller told you, would you agree that after 14 months, and all the clinical exams and emg's you were given, that if you were ever given a diagnosis of MND, that you would be the first case he has ever seen like you? If so, then I don't think what he told you was so bold. Stop thinking that you know more than the experts Greg, thats your first step. You've had some of the best reassurance we've seen on this board. You have Dr. Miller telling you that you have a ZERO percent chance of having ALS. Take that and run with it.

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Re: Good Cop....Bad Cop.

Postby jerry2 on October 17th, 2012, 12:24 pm

bobajojo wrote:You have Dr. Miller telling you that you have a ZERO percent chance of having ALS. Take that and run with it.


And saying any doctor, let alone ALS specialist, that you have 0% chance of something is like a miracle. He had to be so sure about it to say that that I consider you lucky to have such a good reassurance. Now "all you need to to" is to ACCEPT IT. I guess not many people here had the reassurance in the style of 0%. Doctors mostly leave a room for some error. And as you were clearly with one of the best there are for this disease, you are really to take the next step in your head ;-) YOu can not get more than you did from the others I think.
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Re: Good Cop....Bad Cop.

Postby Ghayes420 on October 17th, 2012, 12:49 pm

bobajojo wrote:Compare BFS to heart palpitations. Would anyone with a non-medical background think that the heart misfiring on its beats is nothing to be concerned about? No. But its just that, nothing to be concerned about. I've had them for over 20 years.


Very nice analogy, Agree. You know i have benign PVC/PAV beats confirmed as well, with a clean echo to make me feel good.

bobajojo wrote:I couldn't disagree more when you say "anyone with even an amateur medical background would be nervous". After all that reassurance you've received? I don't think so.


I am referring to if someone was to have my symptoms, prior to seeking the reassurance of an expert. I think they would be quite nervous.

bobajojo wrote:At some point, you are going to have to accept your symptoms. They suck, trust me I know. But in the grand scheme of things, this is a cake walk compared to some of the other stuff out there.


Agree 90%, but this is affecting my quality of life, my ability to concentrate on work, my mood around family, alcohol/substance use, etc. Compared to cancer/MND/ etc, yes a walk in the park.

bobajojo wrote:I know you asked all the ALS specialists every question imaginable. And you saw Dr. Miller, one of the most recognized ALS experts there is. They all came to the same conclusion. In addition, your symptoms match thousands of people whoe have passed through this great forum and their stories also prove that what you have, although very bothersome, is benign. Based on what doctor Miller told you, would you agree that after 14 months, and all the clinical exams and emg's you were given, that if you were ever given a diagnosis of MND, that you would be the first case he has ever seen like you? If so, then I don't think what he told you was so bold.


I would be the second case he has ever seen like me. Second in 30 years. I know zero details of that case, nor do I think we should debate that.


bobajojo wrote:Stop thinking that you know more than the experts Greg, thats your first step. You've had some of the best reassurance we've seen on this board. You have Dr. Miller telling you that you have a ZERO percent chance of having ALS. Take that and run with it.


I don't think I know MORE than the experts about MND, quite the contrary, I am learning new stuff all the time. BUT I do know WAY MORE about whats happening to my own body than they do. Way more. My overall sx can't be all put into a single 15 minute consult. Impossible.

I think you may be confused or maybe I mislead that I still am sitting on this overbearing fear of ALS when, since being told my chance is 0%, this fear is shifting to..."OK, its not ALS, but something neurological and organic is going wrong here, is this going to debilitate me and destroy my quality of life for a long period BOTH physically and mentally?"

Catch my drift on that one?
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Re: Good Cop....Bad Cop.

Postby bobajojo on October 17th, 2012, 2:45 pm

Yes, I understand. BUT, lets think about this....

You said, "BUT I do know WAY MORE about whats going on with my body than they do." Do you? I agree that you know more about your SYMPTOMS, BUT, to say that you know way more about what's actually going on is just not true. These guys are EXPERTS. The technology and experience that they have can tell them WAY MORE about what's actually going on than your nonmedical perception of your symptoms.

And I understand your point about starting to realize this isn't ALS but may be some other sort of neurologic condition that may have longterm effects. BUT, these guys can identify those as well Greg. They are VERY VERY good at picking out the bad stuff. So, getting cleared as many times as you have doesn't just mean you don't have ALS. But you don't have anything concerning them in the least.

I'm just trying to steer you onto the path to full recovery. I know its been a long year for you, trust me Greg, I know. I'm one of the small group of people on this planet who can fully appreciate what you have gone through. I want to see you, and the rest of the people on this board, have a full recovery. And some day, you and I are going to be at a stri... I mean... at a bar somewhere drinking a beer together and saying, "Can you believe that crap we had back in 2012? *beep* that sucked." -Matt
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Re: Good Cop....Bad Cop.

Postby Ghayes420 on October 17th, 2012, 3:19 pm

Touche my twitchy friend.

I understand your points. Its just hard to grasp that all this *beep* thrown together in one big basket is a 'syndrome' of unknown origin. That's harder to grasp IMO than believing that you don't have ALS.

And I have not been to a stri...I mean bar, with just the guys in a long time. Not all of us are lucky enough to have a wife like yours that allow us to go to the bar whenever we want (nor travel with a group of guys to random college campuses with drunk half-naked college girls running around. *ahem*)

Sleep study next week. Cheers!
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Re: Good Cop....Bad Cop.

Postby jerry2 on October 17th, 2012, 3:45 pm

Please tell us how sleep study goes, I think I may apply for one also as I feel my sleep is destroying my body so to say, that all my nerve problems are from a sleep. I feel so crap in the morning, full of pain, tingling, twitching, like I had some seizures at night vith those vivid dreams. Problem is there is only one sleep study centre where I live and it is small. And I mean small. They mostly check for sleep apnea. I'd just like to know what the find with my brain waves when my hand get's "cut off" at night :roll:
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Re: Good Cop....Bad Cop.

Postby Jujulia on October 17th, 2012, 8:52 pm

Great post, Greg. You and I have so many symptoms in common. You are so right, it really sucks to not know what the heck is wrong with us. :evil:
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Re: Good Cop....Bad Cop.

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